Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Neurological Connections To Celiac

gemerald

Recommended Posts

gemerald Newbie
gemerald
Posted

Hello. I'm a new poster in the forums, but I've read lots of comments in this forum before through Google searches and found the information here to be really helpful.

 

I was diagnosed with celiac about two and a half years ago. I'm 100% gluten free, and have been since my diagnosis (with a handful of unintentional exceptions, mainly early on).

 

As soon as I started the gluten-free diet I began feeling so much better. Within a month my migraines with aura and chronic diarrhea went away completely. I thought this was finally the answer to everything! But about a year ago I started to get new symptoms, including numbness, weakness, blurry vision, poor balance (I've fallen to the floor a couple of times), memory problems, speech problems, and extreme fatigue. They didn't all start at once, but progressed gradually one at a time. My doctor ruled out several things, including vitamin deficiencies (a few levels were borderline, but that was fixed with supplements), thyroid issues, and diabetes.

 

I'm now seeing a neurologist because my doctor suspects something neurological. I've had a clear brain MRI, but the neuro hasn't ruled out MS yet. I'm waiting on results on a spinal MRI, and blood work for lupus, rheumatoid arthritis, and a specific type of cancer.

 

I have a couple of questions.

Could these symptoms possibly be related to celiac, and is it even possible to develop new symptoms of celiac after going gluten free? Also, the neuro might want to do a spinal tap. I've read that celiac can cause the same banding signs in spinal fluid as MS, but is that only for people who aren't strictly following a gluten-free diet?

 

The neuro also suggested anxiety as a cause, but he's focusing less on that now that I've had some physical tests that point towards something neurological. When I was still eating gluten I got frequent anxiety and occasional panic attacks, but I haven't had any of that since a few months after going gluten free. Could years of gluten-related anxiety, and also migraines, cause permanent neurological damage? I doubt it, but thought it was worth asking.

 

Thanks in advance for any answers. I'm a little impatient waiting for these test results, and my neuro is admittedly not an expert in celiac.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

I would doubt that celiac disease is causing new symptoms after two and a half years gluten-free but there could be ongoing problems from damage done to the body by celiac disease that is not going to get better.  Neurological issues seem to be the ones that often linger after someone has gone gluten-free, that and pains.  There are some issues that just don't heal (darn-it) and they could be manifesting in new ways for you.

 

I know that celiacs can get the "white spots" on the brain that is seen in MS. I know brain injuries do not always heal... it could be celiac disease related.

 

Then again, celiac disease is an autoimmune disorder and once you have one, you are more likely to get another so it is possible that something else is going on.  :(

 

I'm sorry that I'm of little help.  I do understand your frustration of not knowing and waiting. I too have other issues that crop up and it's pretty maddening trying to figure out what is being caused by what. I have lingering issues with fatigue and arthritis that tend to drive me a bit batty. I know that after I put the effort into being gluten-free for long, it's frustrating when it only fixes some of the problems.

 

I'm sure others will chime in here...

 

Let us know how it goes, and welcome to the board.  :)

notme Experienced
notme
Posted

yes, neuro problems seem to be the last to leave the party.  it's also one of my first symptoms of being glutened:  things get louder, i lose co-ordination, etc..  have you changed something in the past year that could have you getting glutened ?  new job, new sig other, new roommate, etc?  have you been re-tested to see what your antibodies are doing?

ravenwoodglass Mentor
ravenwoodglass
Posted

Sorry you are having such a rough time right now. 

I had severe neuro impact before I was diagnosed and it did take a long time to resolve. However those symptoms were present before diagnosis and then slowly resolved with the help of a physical therapist. It concerns me that these issues have appeared for you after you had good resolution of your celiac related symptoms for so long. I am not a medical professional so I can't say one way or the other but in my opinion you are being wise to have these problems throughly checked out with your doctors. Unless you are getting glutened regularly I don't think celiac neuro symptoms would be appearing after you had been gluten free for so long. 

I hope the doctors are able to figure things out for you soon. 

gemerald Newbie
gemerald
Posted
  • Author

Thanks for the responses.

 

Apparently my lab work and MRI came back clear, so I don't know where to go from here. It feels like celiac all over again - a bunch of non-specific symptoms with no clear diagnosis. It took years for me to get a diagnosis of celiac because every doctor I saw told me it was all in my head. I'm so afraid that it's going to happen again, and I'm going to have to go through this for years, getting worse, with no answers.

 

I haven't made any changes, and I'm very strict with the gluten-free diet, so I know this isn't because of getting glutened. The few times I have been glutened I know about it within an hour.

treesahope Newbie
treesahope
Posted

Thanks for the responses.

 

Apparently my lab work and MRI came back clear, so I don't know where to go from here. It feels like celiac all over again - a bunch of non-specific symptoms with no clear diagnosis. It took years for me to get a diagnosis of celiac because every doctor I saw told me it was all in my head. I'm so afraid that it's going to happen again, and I'm going to have to go through this for years, getting worse, with no answers.

 

I haven't made any changes, and I'm very strict with the gluten-free diet, so I know this isn't because of getting glutened. The few times I have been glutened I know about it within an hour.

I had lactose intolerance early in 1996, and was diagnosed in 2009 Celiac.  Now Gluten free, Diagnosed in 2012 with MS.  With MS, symptoms vary person to person.  I for example had symptoms of MS as early as 2003 yet had a clear brain MRI but no spinal test.  My suggestion is continue as Gluten free as you are, watch this  http://paleozonenutrition.com/2011/12/05/dr-terry-wahls-reverses-her-own-multiple-sclerosis-with-hunter-gatherer-nutrition/.%C2'> Eat healthy.  As healthy as you can.  Dr's are terrific helpers but nutrition is our own way of nurturing ourselves and our bodies.  I was a lucky one, where my symptoms were so severe and gone so long undiagnosed, it was very apparent when testing was done.  I am sorry you had to take so long for your Celiac diagnosis.

cristiana Veteran
cristiana
Posted

I'm just wondering if some of your new symptoms could be down to your developing a new type of migraine. There are so many different types of migraine out there.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    2. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
    3. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless...
    4. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system?
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,845
    • Most Online (within 30 mins)
      7,748
    Paulaannefthimiou
    Newest Member
    Paulaannefthimiou
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.